What Now?

After finding out that my instincts were right I wanted to dive right into everything and anything I could to prepare myself for the rough road ahead. I made an appointment with a specialist for the following week after we found out. I remember that week going by so slowly. I was extremely sick with nausea and horrible heartburn. I also had a regular checkup appointment that week. I was measuring 4 centimeters too big which only added to my stress. As I have proven many times before preparedness is key to my sanity so I researched causes of measuring too big and when mothers are carrying babies with cleft lips or palates they sometimes have a hard time digesting the amniotic fluid.
At 27 weeks we went to the appointment with the specialist. He told me that there was no reason to be concerned about measuring too big. Everything looked great. It’s amazing how much they change so quickly. This time we could actually see that she had a cleft lip. We could see that it was on her left side, just like my dad's is. Although he didn’t think the lip was severe he agreed with the radiologist about her having a cleft palate.Sometimes cleft issues are indicators of other chromosomal issues. He reassured us that he didn't see any reason to be concerned about her having any other problems, such as down syndrome. He told us that there wasn't a whole lot that we could do until she was born and we knew how severe the clefts were. The next step was an appointment with a genetic counselor, and I had to wait for them to call me which drove me crazy.
I kept it together pretty well in the appointment. It was easy to stay optimistic while seeing our cute little baby on a big screen playing and jabbering to herself. But as soon as I got out of the doors I felt it hit me like a ton of bricks. We knew that because the radiologist was pretty sure about the palate that it was wishful thinking to hear anything different from the specialist. That doesn't mean that I didn't stay hopeful, and have a very hard, long, tearful ride home.

 Even though it was hard to hear everything be set in stone it was such a relief to finally be doing something besides research. I knew that I had to buck up and get everything in motion. I didn't want to be one of those moms who just went along with what they were telling me. Which was basically to sit back and wait for her to make her debut. I wanted to be proactive (shocker, I know) and set up consults with some plastic surgeons. The advice that we got from the specialist was to set up consults with them a couple weeks after I had delivered. The last thing I wanted to do was drag my baby from doctor to doctor when we could make that decision before she arrived.

We met with the genetic counselor and learned about pigeon nipples and got a list of plastic surgeons from Primary Children's. There was a lot of other information that she had to share with us but because of my diligence I had covered most of it for myself already. I am very grateful that I did so much research. It made it much easier to face each task with some knowledge. I cant imagine going through it all blind. Waiting for some doctor or counselor appointment to ask a simple question would've been nerve racking.

We were fortunate enough to have the opportunity to meet with a very well known cleft plastic surgeon while we were at our genetic counselor appointment. He was very nice and answered a few of our questions. Knowing that he was one of the most popular choices I knew that many mothers would have been satisfied with that and chose him. Which is obviously not a bad choice. I have seen his work and it is amazing, but I felt that I would be doing Claire a disservice if I didn't at least look into other surgeons before making our decision.

So, since the counseling appointment had passed we had nothing left to do but wait for our last weeks to pass, and choose a surgeon. I got online and looked at each surgeon's profile from the list. I knew I wanted a surgeon who had an obvious passion for cleft work. Out of the 10 surgeons I narrowed it down to 2 that I wanted to meet with. The first consult went well. I thought the doctor was a little on the odd side and wasn't so sure about him but although I wasn't sure about him I felt comfortable in making him our #2 guy. ( a go to guy in case the next consult was a bust) His success stories were great and his pictures on his profile were stunning. There was just something about him that rubbed me the wrong way. One thing that I disagreed with was that he wanted Claire and I to make an appointment to be seen within the first week of life. We live about 4 hours away from these doctors and the last thing I wanted to think about was bringing her to a consult so early.

The next consult was where we found our surgeon Dr. Schmelzer. I knew within the first 60 seconds he was our guy. He was straight forward, to the point and didn't dance around issues. I liked that about him and respected him instantly.

A lot of people gave me some grief about trying to include personality and bedside manner in my decision factors. I disagree with them completely. I think that they are VERY important. I am trusting this man with my baby. A very small baby! And come on lets be honest, my daughter's face is getting operated on, shouldn't I feel comfortable with the man who has the scalpel in his hand?

Dealing With My Emotions

After finding out for sure that Claire had a cleft lip and possible palate there was a whirl wind of emotions going on with me. Some easier to deal with than others. I didn't know if I was supposed to announce it to everyone I knew or keep it to close family and friends. I didn't know how to tell anyone. It was easy to tell the people who knew we were concerned from the beginning and as tacky as it sounds I sent a mass text message to everyone who was waiting for results. This only included our parents, my grandparents, my brothers and a few friends. We had to figure out how to tell everyone else. My husband dealt with this a lot better than I did. I remember he posted about it on Facebook to one of his sisters and I take this very well. I didn't feel like it was something that I wanted posted on the Internet for the whole world to see. Being the amazing man he is he deleted it when I asked him to. Looking back on this I realize how silly it was.
My maternal grandma decided to tell my 2 uncles and their families. I was a little miffed about this at first but my irritation quickly turned to gratitude because I knew that I wouldn't have been able to do it with the grace and strength that I require of myself.
Once more people were aware of our situation I was faced with talking about it with more people. It got to the point that I felt like every time I turned around I was sucking back the tears as I was explaining the process to people. I just could not let myself break in front of anyone. So from the outside looking in I was this strong soon to be mother who was doing anything and everything that I could to prepare our family for the road ahead. But deep down, and when I was alone, I was slowly falling apart.
For the longest time I would spend the first 20 minutes or so of my day crying into my pillow. I felt so guilty. I knew that I couldn't blame myself, I knew it wasn't my fault. But that didn't keep me from feeling this overwhelming guilt. I felt so bad and felt like this was caused by something I did or didn't do. I worried about how people would react to her. The last thing any mom wants is people to say or do mean things to their children. I knew that her family would love her unconditionally but what about everyone else? What about the kids on the playground a few years from now? What about their parents and their rude comments? How was I going to explain it to my 3 year old niece?
After a while I stopped feeling so guilty and stopped blaming myself. But would other people blame me? I was so scared about how other people were going to react to our situation. It seemed like anytime I would come to terms with something within myself something else would surface. I cried and cried and cried some more for 2 months straight. There was nothing anyone could say or do that would make me feel better. I just felt so bad that my beautiful amazing baby girl was going to have to go through so much in the very beginning of her life. I just wanted to take it all away.
I found myself becoming a little jealous of other pregnant women. I wanted more than anything for me and Claire to be able to just have a normal pregnancy, birth and life. I felt so guilty that I couldn't give that to her.
My mom reached out to another mother who had 2 boys with cleft lips. I was a little uncomfortable with this at first. Honestly a little mad at my mom, but one thing to learn about her is she doesn't care if it pisses you off, if she knows that its what is best for you she is going to do it regardless of what you have to say about it at the time. Thank God she is that way otherwise I would've just kept my face buried in my tear drenched pillow. I'm so grateful for my opportunity to talk with this other mom. She was such a great comfort to me. And it didn't hurt that her boys are 2 of the most handsome boys I've seen :) I got to see pictures of her youngest boy before and after surgery. I had seen plenty online from researching but to see these pictures and the huge difference just one surgery made took a little weight off of my shoulders. It was nice to know that there was someone there who was close and had been through the same thing.
Just before I had Claire I had the opportunity to sit down with another mom who had a little girl with cleft lip and palate. She brought pictures and told us stories, and answered questions. As she was starting to tell her story she teared up. Seeing those tears was probably the most helpful and comforting thing that happened through my entire experience. When I saw those tears I knew I really wasn't alone. I wasn't the only mother out there who was shedding tears over this happening to their baby. Her little girl is now 7 and she is stunningly beautiful. That little girl gave me a lot of hope. She had just recently undergone her bone graft from her hip and she looks amazing.
I wont ever be able to fully express my gratitude to these two mothers. They will never know how much their presence in my life through this helped and comforted me.
I know how lucky we are that Claire's issues are just cosmetic. It could have been much worse, it could have been her brain or her heart,etc. But just because this isn't a life threatening issue doesn't mean that we need to feel guilty because we feel bad. Yes, cleft lips and palates are easily fixed. But it is ok to own your emotions and cry. Its ok to feel bad. Its ok to break in front of people, the pain you have isn't something that needs to be hidden in your pillow every morning. Just because it can be fixed doesn't mean that its an easy road.

Finding Out

Since my dad was born with a left side cleft lip we all knew that there was a chance that our baby could be born with some type of cleft. It was in the back of my mind from the beginning. I knew, like everyone told me, that it would be ok and that it could be fixed. But that doesn't mean that there wasn't concern, and many other emotions going on.
At 16 weeks I went to an ultrasound studio to get an early gender determination ultrasound. We found out that we were having a girl! It was an amazing experience to get to watch such a long ultra sound since the ones at the hospital are cut and dry, to the point. On our way home I was looking at Claire's pictures and noticed that her lips looked extra pouty. I immediately let my mind go there, to the cleft. I held back a lot of tears on that long ride home. No one said anything at the time but I wasn't the only one who was thinking that it looked like something was wrong. It wasn't obvious by any means, but since we had all been wondering about it before the ultrasound it was easy for us to put the pieces together.
So I waited 4 long weeks until my next ultrasound appointment with my doctor. I'm a very anxious person naturally and having to wait was excruciating. Instead of dwelling on it and letting the time drive me insane I took my anxiety and committed myself to researching as much as I could. I tried to prepare myself as well as I could. I felt like I had to do something, and this was one thing that I could control, my knowledge. I felt that if I could be prepared and aware that it would help me stay calm and strong. It worked. As soon as anyone would ask me about it I would instantly talk stats. Having information helped me skate around the emotional side of waiting. It was ok for me to completely fall apart but only when I was alone, and it happened more times than I like to admit.
Finally my 20 week appointment came around and little miss Claire decided to move around the whole time and keep her hands by her face. This meant very unclear pictures and no answers. It was really neat to watch her move around and be able to actually feel her movements. It was a big relief that everything looked good and that she was measuring right. Disappointing to hear that we would have to wait 5 more weeks before they would do another ultrasound to look for a cleft lip or palate.
At 25 weeks I went in for yet another ultrasound. I was kind of expecting the radiologist to sit in on the ultrasound considering it wasn't a routine visit. I was sadly mistaken. I went in hoping for answers, left holding back tears. I wanted so badly to just hear yes or no. My instincts were screaming yes and I just wanted some validation. Add to that being told I had to wait ANOTHER week for results. I had reached my breaking point. I remember waking up every day in tears.
The week finally went by and I got the phone call saying the radiologist believed Claire had a cleft lip with a possible cleft palate.
I was out running errands with one of my friends when my phone rang. I knew who it was, I had been very impatiently waiting for them to return my phone call. I remember hearing the words and once again snapping into "control". Asking about her brain, heart, lungs etc and then asking what our next step was, while holding back my tears and trying with all I had in me to just make it to my house before I fell apart. That friend was probably the only person who ever saw me crumble. I ran to my house and fell to the floor into the most uncontrollable, helpless sob I have ever felt in my life. I had so many emotions running through my mind; guilt, sadness, worry, pity but I think I was most of all relieved. To finally have an answer and to know that we were on our path to help our baby.

Our Beginning

We found out we were pregnant really early, 3 weeks. We hadn’t planned or prevented and we were somewhat surprised. We had a lot of new things going on in our lives at the time. We had just moved across the country, just gotten married, and were living at my mother's house until we could figure out our next step. The initial plan was to stay in Utah for a while then to move back to the east coast, and THEN start a family. But obviously little Claire had other ideas.

We decided that staying here in Utah was probably our safest, best bet. I have all my family here in one small town and really wanted Claire to grow up with the closeness and security that having your family so close provides. Convincing my husband wasn’t easy, but nothing in life ever is! Once we decided to stay here in Utah we began house hunting. We found our home very quickly, and began the remodel. Right around this time, December 16th 2011 to be exact, I had made an appointment for an ultrasound at a place that will do gender determination early. My mom spends a lot of her time in Africa with my step dad for his work and she was getting ready to head back and wanted to know the sex of our little peanut before she left. Okay, I was a little impatient to!

We were all so excited to get to find out what we were having. I was determined we were having a boy, but most everyone else was saying girl. Well, 3 little dots on the screen proved me wrong and told us we were having ourselves a little baby Claire. We had already chosen names at this point. I am an extreme planner and must plan every detail of everything. That's why when I noticed that her lips were extra pouty in the ultrasound pictures. I immediately started researching cleft lip and palate. My dad was actually born with a cleft lip. So, my brothers and I all knew we could possibly have a baby that would be born with one as well.

I was very vigilant about trying to find out as much as I could. From feeding to actual procedures, any information I could get my hands on. There were some websites about these 2 subjects but I couldn’t find a whole lot about day to day struggles, emotional hurdles, and personal acceptance.

Luckily I have an amazing mother who pushed me to reach out to other mothers in the community who had been through the same thing. Oddly enough in our small corner of Utah there have been quite a few cases. I was lucky enough to have 2 great mothers to answer my million questions and I couldn’t be more grateful to them or my mom for pushing me to reach out to them.

Now, we have our beautiful little Claire and after a very tough stay in the hospital and a bittersweet week at home I have realized that there should be more resources for mothers and families in general who are going through this. I know that having a child with cleft lip or palate isn’t the end of the world, and it’s something that is easily fixed, just check out most of the other pages, blogs and literature on the subject, that’s what they all tell you. But my blog, Claire's Wide Smile is going to let you travel through our experience, beginning to end, good and bad. I can’t begin to explain the relief I felt when I would talk to the other mothers and hear REAL stories not medical mumbo jumbo that you can find anywhere. I needed so desperately be able to organize my emotions the way I did appointments. I felt out of control. At first I felt so alone with all of these crazy emotions and thoughts. After talking with these two I realized not only that I wasn’t alone, but that I wasn’t crazy!